finally an update!

18/4/10 Midnight

Hello All...

Apologies for the lack of updates....safe to say Anouk has been great over the last month, no major dramas & it has been great just getting back to normal life. Like Neavey, Anouk was fine as a 2 year old but as a 3 year old!!!

this is what's been happening...

Her NG Tube was "taken" out the morning she had her moulding session for the Radiation treatment. This is the head mask that protects the rest of her head during Radio Therapy. It has taken the best part of 3 weeks for Anouk to get back into some kind of normal eating pattern. At the moment she is doing well but her weight has dropped to just over 13.5 kg which is a 'bit' low! The last thing we want to do is put the tube back in so we are trying to get as much down as we can but funny enough she doesn't want food every 15 mins!

Granny Sue & Pa arrived 3 weeks ago & that has been wonderful for the kids! Slowly but surely the kids are getting better at beating up PA!

Anouk started Radiation on Wed 7/4/10. Her slot is approx 1140. She has a General Anesthetic every day which means she has to fast from 0530 & no water 0930. It's very light & she is normally awake ready to have a muffin by 1230. No a great schedule when you are trying to fatten her up!

We have just spent the day in Brighton (UK) watching our good friend Phil Thomas run the Brighton Marathon to help raise money for the Royal "Mars Bar".

Luckily we were able to see him a few times during the 4 1/2 hours to took him to complete the 26 rather hot..miles. In other words Phil did most of his training in temps about 10 - 15 deg lower than today.

It was a great achievement & Anouk was so excited that she fell asleep!

Phil thank you so much for the hard miles. You have done a fantastic job & we are very grateful. Also a big thank you to everyone who has donated, we will let you know what the final figure is soon.

Neavey & Anouk also got into the fund raising mood on Saturday day morning. They started outside home but it was a bit quiet. That wasn't the case outside the Village shop..captive audience & they filled the tin in no time.

Anouks Radio Therapy treatment will continue on until May 19. We'll post some pics of what that all looks like in the next few days. There have been no side effects so far but we are waiting on clarification on the angle at which they are hitting the tumor from as we have noticed a slight deterioration of hearing. She will have her hearing aid fitted this Thursday.

Apart from that it would be great if she would sleep a bit better & stop having dreams. The other night she woke up yelling something along the lines of...." don't wash the elephants trunk.."!

Giddy up 'Twinkle'

2330 16/3/10

Anouk was very excited at the idea of a pony ride on 'Twinkle'...but a little reserved when it all happened!

Nice to be home...

1900 15/1/10

Anouk broke all records with her handling of the High Dose (Napalm) cycle of Chemotherapy...her last Chemotherapy treatment for now. We were let out Mon March 8th March, 14 days after her stem cells went back in. They really starred to kick in 10 days after the transfusion & she took off after that. It got pretty grim there for a while but as always Anouk just got on with it. The last week has been great. Eating normal food has been a bit hit & miss but she is getting there. It's a balance between maintaining her weight, Currently around 14.6 kg's & not having to rely on the bags & pump. So we have been feeding her some overnight & nothing during the day in the hope that she will be hungry & will go for normal food. So she gets whatever she wants, whenever she wants it. Sweeties are always popular but it's the other stuff we are trying to push...patience.

This week Anouk will have a Audiology test & a General Anaesthetic (GA) for her face mask "moulding". Hearing wise she is doing fairly well. Her hearing went downhill during High Dose due to the blocking of tubes with the Mucossitis she had. It has improved since that has all finished & we are just hoping that the good right ear isn't getting any worse. However as we have said before we will not be surprised if she will have to have an hearing aid at some point.

We met with Frank the radiologist on Wednesday last week & he laid out all the pros & cons with radiation treatment. As with all the treatments Anouk has had there are risks involved & radiation is no different. However the benefits far out way the risks. The most concerning risk is possible damage to the part of the brain that will effect her ability to learn in the future. Ie she would possible learn slower than others, but the gap would get bigger over time. Frank spelt this out as a possible risk but it was no more than any other...good news. The tumour when 1st scanned was approx. 3.2cm in length & we an oval shape off approx. 1.5cm wide. The Radiation will be focussed on the original size/are eventhough it has shrunk since then. The moulding session is to have a head mask fitted so as to protect her dung radiation & to make sure she is in et exact same position each time & there is proper access to monitor to her her mouth for monitoring the GA.

Radiation will start on either April 12 or 19 & be five days a week for 6 weeks excluding public holidays, in which case those days will be added on at the end. Our slot is 1200 so we will arrive at 1100. The actual treatment is only a few minutes & as soon as she has recovered we will be able to go home. We estimate that this will be around 1300 but we shall see. Luckily granny Sue & PA will be here in a couple of weeks & they know all about the radiation game!

Neave has ben fantastic with Anouk is really enjoying have a normal family life. All we need now is for Anouk to take a leaf out of Neave's book & sleep in her own bed for the night!

We Are Happy

We are happy!

Neave and Anouk are really enjoying being together and a further bonus is that Neave is fantastic at jollying Anouk out of her three year old moments. We have had a really good week doing normal family things together - as you can see from the photos. And today Anouk and I visited Katie, Anouks lovely child minder - Anouk insisted that I left her to play with Katy and so I went and enjoyed tinkering in the allotment and lunch with some girlfriends - we both had a lovely day and I plan to make Anouks date with Katy a regular Monday thing at least until radio starts. Anouk is going to ride a shetland pony tomorrow and is very excited about it - however we are going to have to squeeze it in between visits to the Royal Surrey as her blood test today indicated that she needs a transfusion of blood and platelets sometime this week - probably tomorrow - this has not come as a surprise as her bone marrow is not yet recovered after the stem cell transplant.

The brown moustache is not another chemo side effect but a result of chocolate indulgence. Anouk has not really regained her appetite and so although we are desperate to move on from the nose tube, i think that we are going to have to be patient for a little bit longer as she can not really survive on Grandad's home made summer pudding (which is pretty much the only thing she has eaten for the last 48 hrs and is not in plentiful supply at this time of year). Everything we give her is fortified with powdered milk or cream in an attempt to pile on the pounds.

HOME

We have been home since Monday and saw the team at the Marsden today. They are all delighted with Anouk's progress and Stergios, our consultant said that Anouk was out in record breaking time, this is great news, she has tolerated her chemo well, has had a good response to it and this is all that we could hope for at this stage. Radiotherapy will start around Easter and in the meantime we are all enjoying spending normal (whatever that is!) family time together, we can never thank you all enough for your invaluable support.

On the improve

The cheeky one is back.... (and i am not talking about Sharon...)

Anouk was allowed in school for the day - i might have difficulty keeping her away tomorrow

One to one numeracy tuition for Neave

Don't try this at home!
The girls decorated HMS Belfast T-Shirts - now Anouk's nighty

Anouk has improved out of sight over the past 24 hours. She has been up all day today, has been smiling, chatting, walking short distances, she has been taken off of all but one of her antibiotics she is even vaguely interested in food - looking at it more than eating it. Her improvement is reflected in her blood results. We are all delighted and very impressed by the rate of improvement as she was expected to be unwell until the weekend. I am now desperate to get home but the medical staff are keen that we do not rush things, she remains on intravenous feeding and so the main aim is to increase her nasogastic feeds and encourage eating and drinking and wait for her to get a bit stronger.

Neave has been up today, I was missing her and she wanted to visit, the school at the Marsden had a visit from staff from HMS Belfast and so, with the support of her school, it seemed to make sense for her to come up - she had a sleepover last night and the with the combination of Anouks improvement and Neaves visit i was so excited i could hardly sleep! Anouk has woken up very unhappy each morning since she became unwell, but this morning i knew we were going to have a good day when Neave and i were laying in the bed in the cupboard and the first thing we saw of Anouk was a cheeky hand waving above her cot sides...

Neave had one to one tuition, non stop activity and so has loved being here.

I feel better now!

2230 28/02/10

Anouk slept most of this afternoon & was in good form when she woke up..& mummy came back!

So we thought it would be nice to have some happy pics.

Have a good day everyone.